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“The digital transformation of health and care will improve the lives of all Europeans”

Giving access to personal health data everywhere in Europe. Joining big data for genomic research and for detecting outbreaks of infectious diseases. Funding high-level digital research projects to develop new pharmaceuticals and fight rare diseases. The European Commission has an ambitious view on the future of digital health.

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It's important to guarantee a long-term funding to make our ambitions in digital health come true. But more important is the willingness and expertise of all partners in this story said Vytenis Andriukaitis, European Commissioner for Health and Food Safety.

For Vytenis Andriukaitis, European Commissioner for Health and Food Safety, the further digitisation of health and care is key to the common societal challenges in the EU. “Only by joining the forces at a European level, we can maximise the potential of the digital revolution. Embracing digital technology in a strategic and coordinated manner can increase the well-being of millions of citizens and radically change the way health and care services are delivered to patients.” Vytenis Andriukaitis explains in a interview to “ICT&health” how the European Commission supports and enables the digital shift in European healthcare.

“Being a medical doctor myself – I have worked for many years as a heart surgeon – I have seen how healthcare has radically changed in the past decades. People live longer than ever, but not always in good health. Doctors see how non-communicable diseases are on the rise, caused by risk factors such as tobacco, alcohol and obesity. We are also seeing a growing threat from infectious diseases due to increased resistance to antibiotics and new or re-emerging pathogens. At the same time we still feel the pressure of austerity and the call for more efficiency.”

“On the other hand we have seen incredible progress in medical science and pharmaceutical research. Diagnosis comes faster and more accurate than ever. Patients get a better and more individualised treatment. In my view, all this progress is made possible by two main drivers: digitisation and collaboration. Not only collaboration between all the outstanding experts in the different medical disciplines, but also the cooperation across borders.”

For Commissioner Andriukaitis, further investment and cooperation in digital healthcare is fundamental. Earlier this year, the European Commission adopted a strategy to speed up this process.

Commissioner Andriukaitis, why is the European Commission taking up such an active role on digital health?

“Though health policies are mainly led by national or regional governments, the European Union has several tasks in this area. We are for instance responsible for preventing and managing cross-border health threats, and for structuring the single market for pharmaceuticals. We also support the national level with infrastructure investments, assistance in policy reforms, or funding of joint research projects. And don’t forget that a cornerstone of the Union, the free movement of our citizens, has now become a reality for a lot of people. Millions of EU citizens travel, work or live in another country and they expect to have access to the best medical services everywhere in Europe.”

Talking about those mobile citizens: how can digital innovation make their life easier?

“Most European countries recently made great progress in digitising their healthcare systems. Doctors have digital records of their patients, hospitals share their reports with the general practitioners, prescriptions for pharmacies are digitised. But the moment you travel to another country and you need to go to a pharmacy or a doctor, all falls back on the old-school paperwork. Or worse, imagine you are urgently brought to a hospital abroad, and the emergency doctor has to make several phone calls or run some tests to know your blood group, allergies or other essential medical information loosing precious time. To tackle this, we are currently developing a European digital system through which health data can be exchanged. This requires both the set-up of an IT platform, and making sure that the different national health information systems are interoperable. This is a real challenge as today we still face a lot of fragmentation and lack of interoperability of our health information systems, even within countries.”

citizens will not only get access to their personal health data, they will also get a more active role. By using wearables and mobile health apps, they can actively engage in health promotion and self-management of chronic diseases.

“In a first phase the exchange will include patient summaries and ePrescription. These two use cases of patient data exchanges will start end 2018 between 9 European countries. By 2020 more than 20 EU Member States are expected to join, including The Netherlands. In parallel we are also exploring the possibility of exchanging full electronic health records.”

Can we share and exchange personal medical information without breaching privacy?

“This is indeed a genuine concern. When we prepared our strategy, we collected the views of almost 1 500 citizens. While nearly 80% of them agreed that sharing of health data could be beneficial to improve treatment, diagnosis and prevention, the same number considered the risk of privacy breaches as a major barrier.”

“Citizens should remain in control of and be able to share their health data securely with authorised parties. This goes for medical treatment, but also for preventive services, research or for any other purpose they deem appropriate. Unauthorised access should be prevented.”

How will the EU guarantee this?

“The most important tasks for the EU are the development of standards for data quality and reliability, standardised electronic health records and health-related cybersecurity standards. And these are things that go beyond national borders and that no country can solve on its own. With the entry in force of the new General Data Protection Regulation in May, it is the responsibility of the Member States to ensure the necessary provisions for data security and privacy. We encourage them to implement the data protection rules in a harmonised way, so that we can avoid undue obstacles in sharing health data across borders and in secondary use of data for research.”

You also mentioned European support for digital research and innovation.

“This is indeed an area where Europe still has a huge, untapped potential. Collecting and analysing data at a European scale will help in the development of new pharmaceuticals or allow us to discover patterns that will lead to new prevention, diagnostic and therapeutic avenues. It will enable us to quicker detect emerging epidemics. We will also be able to gather the scattered information of rare and complex diseases, where half the new cases are found in children.”

“Several national and regional initiatives already support the pooling of genomic and other health data to advance research and precision medicine. We bring those resources now together in secure cross-border digital infrastructures. For this, we are building on the European High Performance Computing initiative and the European Open Science Cloud.”

“In April this year, 13 European countries have signed a declaration for delivering cross-border access to their genomic information. We are looking forward to welcome The Netherlands to join this initiative in 2019. This initiative is a game changer for European health research and clinical practice: we will get access to at least 1 million sequenced genomes in the EU by 2022, and then to a larger prospective population-based cohort (beyond sequenced genomes) of at least 10 million people by 2025.”

eHealth puts the patient again in a central position. Are our health systems adapted to this?

“Indeed, citizens will not only get access to their personal health data, they will also get a more active role. By using wearables and mobile health apps, they can actively engage in health promotion and self-management of chronic diseases. They can also send feedback and data about their health to their doctors. This can improve the quality of health services and ultimately people’s health and well-being. Moreover, it may help control the rising demand for and improve access to health and care, especially in countries with remote areas or ageing communities.”

“All this will indeed go together with a reform on how healthcare is organised. We all agree that health systems need to shift from treatment to health promotion and disease prevention. From disease focussed perspective to a focus on well-being and individuals. From a fragmentation of health services to its integration and coordination along the continuum of care.”

Aside from the technology and the organisational reforms, don’t we need to invest in digital skills?

“It won’t suffice to provide the tools, if the citizens – but also our healthcare providers – don’t know how to use them. We have always underlined the importance of digital skills and literacy, also in the medical sphere. We support several projects to improve the digital skills, especially among populations which need it the most.”

You are very ambitious. But at the same time the budget for European projects is under pressure. Will the EU have the necessary resources to put all the plans into practice?

“The budget of the EU has always been very limited, hardly 1% of the European GDP. But so far, we could achieve concrete results, for instance thanks to our Horizon 2020 programme for research and innovation. At this moment the European Parliament and the Council are discussing our future budget for the period 2021-2027. The Commission has proposed several financing programmes, from which digital health will get support: the Horizon Europe programme for research, Digital Europe, the Connecting Europe Facility, the European Social Fund Plus, and several others.”

“Let’s not forget that those investments lead to a direct return for all our partners in the EU countries: hospitals, universities and research institutes, innovation centres and – not the least – patients and doctors.”

“It is important to guarantee a long-term funding to make our ambitions come true. But more important is the willingness and expertise of all partners in this story: policy makers, healthcare professionals, industry, researchers, patient representatives. Again, as a doctor and coming from the Baltics , I have seen the value of crossing borders, exchanging knowhow and working together.”

The knowledge should travel, not the patient

A very concrete example of health collaboration in a digital environment are the newly created European Reference Networks (ERNs) for rare and complex diseases. More than 900 medical teams from all over Europe work together to diagnose and treat patients, sharing information through a common, secured patient management system.

Vytenis Andriukaitis: “Regularly we read stories in the media about patients, too often young children suffering from cancer or genetic diseases, who cannot be helped in their region or their country because the expertise is missing. In Europe alone, almost 30 million people are affected by one of the 5 000 to 8 000 life threatening or chronically debilitating rare diseases. For them we have launched, with EU funding, in the spring 2017 the ERNs.”

“To review a patient’s diagnosis and treatment, ERN coordinators convene ‘virtual’ advisory boards of medical specialists across different disciplines, using a dedicated IT platform and telemedicine tools. Currently, 24 ERNs are working on a range of thematic issues including bone disorders, childhood cancer and immunodeficiency.”

Are there also Dutch hospitals involved in this project?

“Absolutely, The Netherlands is one of the leading countries in this initiative. 90 medical teams from 13 different Dutch hospitals are involved in the networks. Moreover the 5 of the 24 networks have a Dutch coordinator: the specialists working on endocrine conditions, on craniofacial anomalies, on genetic tumour risk syndromes, on heart diseases and on congenital malformations.”

“Thanks to the hard work of all those experts, we can save money for health systems and, most importantly, improve the wellbeing and even save the lives of patients that had lower chances to receive effective treatment.”

Vytenis Andriukaitis

Vytenis Andriukaitis (1951) studied medicine and surgery at the University of Kaunas, and holds also a master’s degree in history. Between 1975 and 1993 he worked as a medical doctor and surgeon in Kaunas, Ignalina and Vilnius. In the period of Lithuania’s independence, he was one of the founders of the Social Democratic Party and co-author of the country’s constitution. He was a member of the Lithuanian parliament for many years and became Minister of Health in 2012. In 2014, with the start of the Juncker Commission, he became the European Commissioner in charge of Health and Food Safety.